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Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

Discussion in 'Petitions' started by Kalliope, Aug 25, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Link to English text for the petition and a guide for how to support it with a signature.
    Petition to help Norwegian ME patients


    This was originally a post in the News from Scandinavia thread, but as people from outside Norway are welcome to join the petition, I thought I'd make a new thread here in the Advocate Action Alert forum in order to make more people aware.

    A petition from an ME patient demanding that leaders of the Norwegian national center of excellence for CFS/ME (known for a strong belief in a biopsychosocial approach) must go.

    The background for this petition is explained in a blogpost from the initiator Nina E. Steinkopf.
    Underskriftskampanje: Ledelsen i Nasjonal kompetansetjeneste for CFS/ME må gå!
    google translation: Petition: The leaders of the National Center of excellence for CFS/ME must go!

    The National Center of excellence for CFS/ME has chosen a biopsychosocial understanding model for ME and merges ME with other conditions. This leads to improper treatment and poor offerings for ME patients. Support the signature campaign that requires management in the competence service to go!


    Link to petition: Ledelsen i Nasjonal kompetansetjeneste for CFS/ME må gå!
    google translate: The leaders of the National Center of excellence for CFS/ME must go!

    There are 1500 signatures by now.

    Here is a tweet from today by the initiator:
     
    Last edited: Aug 26, 2018
    Forestvon, JohnM, alktipping and 22 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    I've signed it (I think!).
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    alktipping, MEMarge, MeSci and 5 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    If you translated the page with Chrome and it gave you an error that all fields have to be filled, try it again without translating the page.
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The initiator has provided an English text for the petition and a guide for how to support it with a signature.

    Petition to help Norwegian ME patients

    The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters
     
  7. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @Kalliope - It would be a good idea to make it obvious that people from any country can sign, I think
     
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I've changed the title, but if you have other suggestions do let me know :)

    ETA: Also added the link with English text for the petition at the top of the first post.
     
    Last edited: Aug 26, 2018
    alktipping, Skycloud, MeSci and 3 others like this.
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    1800 have signed by now. Nice to see names from outside Norway as well :)
     
    rvallee, Milo, Lisa108 and 9 others like this.
  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    That was my first Norwegian experience.

    "Ja" to stopping the BPSers.
     
    Inara, Lisa108, alktipping and 7 others like this.
  11. alex3619

    alex3619 Senior Member (Voting Rights)

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    Bipsers must go.
    PS Signed.
     
    Inara, alktipping, MEMarge and 6 others like this.
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A psychologist who previously worked at the National Center of Excellence for CFS/ME, has recovered from ME by "non-medical"approaches and has written several letters-to-the-editor criticising the Norwegian ME Association for its emphasis on a biomedical approach to ME has now written to a news site for research about the campaign. She strongly opposed this petition.

    ME-pasienter er ikke tjent med helsepersonell som står fritt til å synse, mene og tro
    google translation: ME patients are not served by healthcare professionals who are free to guess and believe.

    We should be happy with a healthcare system that is capable of seeing psyche, soma and social relationships in context (biopsychosocial approach), especially in complex situations.

    She also seems to think the negative results in the RituxME trial speaks FOR a BPS approach and that there is little to offer the patients with from a biomedical approach. Those who are open for a more general, wide and "knowledge based" approach have a bigger elbowroom.

    There are 2000 who have signed the petition by now.

    (Edited for clarity)
     
    Last edited: Aug 30, 2018
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Just realised, this letter to the editor begins with (my bold):

    In an ongoing signature campaign spread through FB, twitter, blogs and to a foreign ME forum, it is required that the management of the National Competence Service for CFS/ME must go.

    That ME forum must be Science4ME (unless it has been shared other places as well that I'm not aware of).

    It made me happy to know this psychologist is following the forum.
    And in case you are reading this, Nina, I want you to know you are welcome to join us. Dialogue is the best. :)
     
    Forestvon, Inara, Lisa108 and 12 others like this.
  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A newssite for research has written an article about the petition. I don't know if the title has a good translation, but hope the meaning comes through.

    Forskningno: Trist at ME-aktivistene går i skyttergravene
    google translation: Sad that the ME activists goes into the trenches

    Senior doctor for the national center of excellence for CFS/ME says the claims in the petition is incorrect. She further says that they believe CFS/ME probably is linked to both body and soul and that isn't possible to strictly distinguish between psyche and soma. Their service should try to cover everyone, both those who say ME is a mental illness and those who say it is physiological. The fact that they get critiqued from both sides of the debate is hopefully an indication that they are able to keep the balance.

    The petition has 2150 signatures by now.
     
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  15. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm certain I shouldn't trust the recommendations of any doctor who thinks the soul is a real medical thing. It's only one step from that statement to we have ME because we've been cursed, or bad karma, or we are just really, really bad/evil people etc. (how else does one get a diseased soul)

    Keep souls where they belong, in religion, and out of science and medicine.

    I can't believe a doctor would say such a thing, no matter what their personal views might be, it's just incredibly insulting, potentially dangerous, and unprofessional.
     
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    In an upcoming seminar about ME, organised by the Norwegian National Center of excellence for CFS/ME and Norwegian Physiotherapist Association, there will be a lecture about the patients' perspective. This will be held by psychologist Nina Andresen who wrote the letter to the editor against this petition. The title for her lecture is "Recovery from CFS/ME - my experience as patient".

    The initiator behind the petition has written a blog post about whether this is someone ME patients can feel represents them.

    Er dette din representant?
    google translate: Is this your representative?

    Andresen is in a unique position; She is both private and publicly employed, with direct impact on the patient group, and she is both healthcare and former patient. Therefore, she falls outside the regulations that apply to alternative treatment while at the same time having, as a healthcare professional, freedom of speech. Now she will inform and influence the physiotherapists.

    There are now 2 270 who have signed the petition.
     
    Last edited: Sep 4, 2018
    MSEsperanza, Joh, Lisa108 and 7 others like this.
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    People who recover with 'non-medical' approaches would be more credible if they did not show such clear evidence of brainwashing. Something of importance to say can usually be said in a variety of different ways. But, just like the holy trinity of God the Father, God the Son, and the Holy Spirit we always hear that it is God the Bio, God the Psycho, and The Social Spirit. It does not matter that in modern scientific context this means sweet Fanny Adams.
     
    MSEsperanza, rvallee, Joh and 16 others like this.
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The initiator behind the petition has written an answer to this letter to the editor. She talks about the national center for excellence's eagerness for Lightning Process, the PACE-trial, and this psychologist's role in the ME debate.

    Helsepersonell som synser, mener og tror forårsaker store skader
    google translate: Healthcare professionals that guesses and believes cause great harm

    It is irresponsible by health professionals to recommend undocumented treatments and quackery. It damages the patients and also helps reduce the trust to healthcare professionals and researchers. ME patients, on an equal footing with other patient groups, require evidence-based treatment. Until a cure is present, the health authorities must at least stop making patients even worse.

    There are 2 300 who have signed the petition by now.
     
    Last edited: Sep 5, 2018
    MSEsperanza, Joh, Lisa108 and 10 others like this.
  19. alex3619

    alex3619 Senior Member (Voting Rights)

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    Actually I think a bigger problem lies with newer patients who recover on their own. Whatever they were doing last gets the credit. Its really hard to figure causality out from such data, typically it cannot be done reliably.
     
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  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    2 500 have signed the petition by now.
     
    MSEsperanza, Lisa108, MeSci and 4 others like this.

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